The Immortal Life of Henrietta Lacks

400 Pages·2011·1.89 MB·English

by  Rebecca Skloot

M P
ORE RAISE FOR
The IMMORTAL LIFE of HENRIETTA LACKS
“No one can say exactly where Henrietta Lacks is buried: during the many years Rebecca Skloot spent working on
this book, even Lacks’s hometown of Clover, Virginia, disappeared. But that did not stop Skloot in her quest to
exhume, and resurrect, the story of her heroine and her family. What this important, invigorating book lays bare is
how easily science can do wrong, especially to the poor. The issues evoked here are giant: who owns our bodies,
the use and misuse of medical authority, the unhealed wounds of slavery … and Skloot, with clarity and
compassion, helps us take the long view. This is exactly the sort of story that books were made to tell—
thorough, detailed, quietly passionate, and full of revelation.”
—TED CONOVER, author of Newjack and The Routes of Man
“It’s extremely rare when a reporter’s passion finds its match in a story. Rarer still when the people in that story
courageously join that reporter in the search for what we most need to know about ourselves. When this occurs
with a moral journalist who is also a true writer—a human being with a heart capable of holding all of life’s
damage and joy—the stars have aligned. This is an extraordinary gift of a book, beautiful and devastating—a
work of outstanding literary reportage. Read it! It’s the best you will find in many, many years.”
—ADRIAN NICOLE LEBLANC, author of Random Family
“The Immortal Life of Henrietta Lacks brings to mind the work of Philip K. Dick and Edgar Allan Poe. But this
tale is true. Rebecca Skloot explores the racism and greed, the idealism and faith in science that helped to save
thousands of lives but nearly destroyed a family. This is an extraordinary book, haunting and beautifully told.”
—ERIC SCHLOSSER, author of Fast Food Nation
“Rebecca Skloot has written a marvelous book so original that it defies easy description. She traces the surreal
journey that a tiny patch of cells belonging to Henrietta Lacks’s body took to the forefront of science. At the same
time, she tells the story of Lacks and her family—wrestling the storms of the late twentieth century in America—
with rich detail, wit, and humanity. The more we read, the more we realize that these are not two separate stories,
but one tapestry. It’s part The Wire, part The Lives of the Cell, and all fascinating.”
—CARL ZIMMER, author of Microcosm

For my family:
My parents, Betsy and Floyd; their spouses, Terry and Beverly;
my brother and sister-in-law, Matt and Renee;
and my wonderful nephews, Nick and Justin.
They all did without me for far too long because of this book,
but never stopped believing in it, or me.
And in loving memory of my grandfather,
James Robert Lee (1912–2003),
who treasured books more than anyone I’ve known.
Contents
A Few Words About This Book
Prologue: The Woman in the Photograph
Deborah’s Voice
Part One
LIFE
1. The Exam … 1951
2. Clover … 1920–1942
3. Diagnosis and Treatment … 1951
4. The Birth of HeLa … 1951
5. “Blackness Be Spreadin All Inside” … 1951
6. “Lady’s on the Phone” … 1999
7. The Death and Life of Cell Culture … 1951
8. “A Miserable Specimen” … 1951
9. Turner Station … 1999
10. The Other Side of the Tracks … 1999
11. “The Devil of Pain Itself” … 1951
Part Two
DEATH
12. The Storm … 1951
13. The HeLa Factory … 1951–1953
14. Helen Lane … 1953–1954
15. “Too Young to Remember” … 1951–1965
16. “Spending Eternity in the Same Place” … 1999
17. Illegal, Immoral, and Deplorable … 1954–1966
18. “Strangest Hybrid” … 1960–1966
19. “The Most Critical Time on This Earth Is Now” … 1966–1973
20. The HeLa Bomb … 1966
21. Night Doctors … 2000
22. “The Fame She So Richly Deserves” … 1970–1973
Part Three
IMMORTALITY
23. “It’s Alive” … 1973–1974
24. “Least They Can Do” … 1975
25. “Who Told You You Could Sell My Spleen?” … 1976–1988
26. Breach of Privacy … 1980–1985
Photo Insert
27. The Secret of Immortality … 1984–1995
28. After London … 1996–1999
29. A Village of Henriettas … 2000
30. Zakariyya … 2000
31. Hela, Goddess of Death … 2000–2001
32. “All That’s My Mother” … 2001
33. The Hospital for the Negro Insane … 2001
34. The Medical Records … 2001
35. Soul Cleansing … 2001
36. Heavenly Bodies … 2001
37. “Nothing to Be Scared About” … 2001
38. The Long Road to Clover … 2009
Where They Are Now
Afterword
Acknowledgments
Notes
A Few Words About This Book
This is a work of nonfiction. No names have been changed, no characters invented,
no events fabricated. While writing this book, I conducted more than a thousand hours
of interviews with family and friends of Henrietta Lacks, as well as with lawyers,
ethicists, scientists, and journalists who’ve written about the Lacks family. I also relied
on extensive archival photos and documents, scientific and historical research, and the
personal journals of Henrietta’s daughter, Deborah Lacks.
I’ve done my best to capture the language with which each person spoke and wrote:
dialogue appears in native dialects; passages from diaries and other personal writings
are quoted exactly as written. As one of Henrietta’s relatives said to me, “If you pretty
up how people spoke and change the things they said, that’s dishonest. It’s taking away
their lives, their experiences, and their selves.” In many places I’ve adopted the words
interviewees used to describe their worlds and experiences. In doing so, I’ve used the
language of their times and backgrounds, including words such as colored. Members of
the Lacks family often referred to Johns Hopkins as “John Hopkin,” and I’ve kept their
usage when they’re speaking. Anything written in the first person in Deborah Lacks’s
voice is a quote of her speaking, edited for length and occasionally clarity.
Since Henrietta Lacks died decades before I began writing this book, I relied on
interviews, legal documents, and her medical records to re-create scenes from her life.
In those scenes, dialogue is either deduced from the written record or quoted verbatim
as it was recounted to me in an interview. Whenever possible I conducted multiple
interviews with multiple sources to ensure accuracy. The extract from Henrietta’s
medical record in chapter 1 is a summary of many disparate notations.
The word HeLa, used to refer to the cells grown from Henrietta Lacks’s cervix,
occurs throughout the book. It is pronounced hee-lah.
About chronology: Dates for scientific research refer to when the research was
conducted, not when it was published. In some cases those dates are approximate
because there is no record of exact start dates. Also, because I move back and forth
between multiple stories, and scientific discoveries occur over many years, there are
places in the book where, for the sake of clarity, I describe scientific discoveries
sequentially, even though they took place during the same general period of time.
The history of Henrietta Lacks and the HeLa cells raises important issues regarding
science, ethics, race, and class; I’ve done my best to present them clearly within the
narrative of the Lacks story, and I’ve included an afterword addressing the current legal
and ethical debate surrounding tissue ownership and research. There is much more to
say on all the issues, but that is beyond the scope of this book, so I will leave it for
scholars and experts in the field to address. I hope readers will forgive any omissions.
We must not see any person as an abstraction.
Instead, we must see in every person a universe with its own secrets,
with its own treasures, with its own sources of anguish,
and with some measure of triumph.
—E W
LIE IESEL
from The Nazi Doctors and the Nuremberg Code
PROLOGUE
The Woman in the Photograph
There’s a photo on my wall of a woman I’ve never met, its left corner torn and
patched together with tape. She looks straight into the camera and smiles, hands on
hips, dress suit neatly pressed, lips painted deep red. It’s the late 1940s and she hasn’t
yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and
playful, oblivious to the tumor growing inside her—a tumor that would leave her five
children motherless and change the future of medicine. Beneath the photo, a caption
says her name is “Henrietta Lacks, Helen Lane or Helen Larson.”
No one knows who took that picture, but it’s appeared hundreds of times in
magazines and science textbooks, on blogs and laboratory walls. She’s usually
identified as Helen Lane, but often she has no name at all. She’s simply called HeLa,
the code name given to the world’s first immortal human cells—her cells, cut from her
cervix just months before she died.
Her real name is Henrietta Lacks.
I’ve spent years staring at that photo, wondering what kind of life she led, what
happened to her children, and what she’d think about cells from her cervix living on
forever—bought, sold, packaged, and shipped by the trillions to laboratories around the
world. I’ve tried to imagine how she’d feel knowing that her cells went up in the first
space missions to see what would happen to human cells in zero gravity, or that they
helped with some of the most important advances in medicine: the polio vaccine,
chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she—
like most of us—would be shocked to hear that there are trillions more of her cells
growing in laboratories now than there ever were in her body.
There’s no way of knowing exactly how many of Henrietta’s cells are alive today.
One scientist estimates that if you could pile all HeLa cells ever grown onto a scale,
they’d weigh more than 50 million metric tons—an inconceivable number, given that an
individual cell weighs almost nothing. Another scientist calculated that if you could lay
all HeLa cells ever grown end-to-end, they’d wrap around the Earth at least three times,
spanning more than 350 million feet. In her prime, Henrietta herself stood only a bit
over five feet tall.
I first learned about HeLa cells and the woman behind them in 1988, thirty-seven
years after her death, when I was sixteen and sitting in a community college biology
class. My instructor, Donald Defler, a gnomish balding man, paced at the front of the
lecture hall and flipped on an overhead projector. He pointed to two diagrams that
appeared on the wall behind him. They were schematics of the cell reproduction cycle,
but to me they just looked like a neon-colored mess of arrows, squares, and circles with
words I didn’t understand, like “MPF Triggering a Chain Reaction of Protein
Activations.”
I was a kid who’d failed freshman year at the regular public high school because she
never showed up. I’d transferred to an alternative school that offered dream studies
instead of biology, so I was taking Defler’s class for high-school credit, which meant
that I was sitting in a college lecture hall at sixteen with words like mitosis and kinase
inhibitors flying around. I was completely lost.
“Do we have to memorize everything on those diagrams?” one student yelled.
Yes, Defler said, we had to memorize the diagrams, and yes, they’d be on the test, but
that didn’t matter right then. What he wanted us to understand was that cells are
amazing things: There are about one hundred trillion of them in our bodies, each so
small that several thousand could fit on the period at the end of this sentence. They
make up all our tissues—muscle, bone, blood—which in turn make up our organs.
Under the microscope, a cell looks a lot like a fried egg: It has a white (the
cytoplasm) that’s full of water and proteins to keep it fed, and a yolk (the nucleus) that
holds all the genetic information that makes you you. The cytoplasm buzzes like a New
York City street. It’s crammed full of molecules and vessels endlessly shuttling
enzymes and sugars from one part of the cell to another, pumping water, nutrients, and
oxygen in and out of the cell. All the while, little cytoplasmic factories work 24/7,
cranking out sugars, fats, proteins, and energy to keep the whole thing running and feed
the nucleus. The nucleus is the brains of the operation; inside every nucleus within each
cell in your body, there’s an identical copy of your entire genome. That genome tells
cells when to grow and divide and makes sure they do their jobs, whether that’s
controlling your heartbeat or helping your brain understand the words on this page.
Defler paced the front of the classroom telling us how mitosis—the process of cell
division—makes it possible for embryos to grow into babies, and for our bodies to
create new cells for healing wounds or replenishing blood we’ve lost. It was beautiful,
he said, like a perfectly choreographed dance.
All it takes is one small mistake anywhere in the division process for cells to start
growing out of control, he told us. Just one enzyme misfiring, just one wrong protein
activation, and you could have cancer. Mitosis goes haywire, which is how it spreads.
“We learned that by studying cancer cells in culture,” Defler said. He grinned and
spun to face the board, where he wrote two words in enormous print: HENRIETTA
LACKS.
Henrietta died in 1951 from a vicious case of cervical cancer, he told us. But before
she died, a surgeon took samples of her tumor and put them in a petri dish. Scientists
had been trying to keep human cells alive in culture for decades, but they all eventually
died. Henrietta’s were different: they reproduced an entire generation every twenty-four
hours, and they never stopped. They became the first immortal human cells ever grown
in a laboratory.
“Henrietta’s cells have now been living outside her body far longer than they ever
lived inside it,” Defler said. If we went to almost any cell culture lab in the world and
opened its freezers, he told us, we’d probably find millions—if not billions—of
Henrietta’s cells in small vials on ice.